My 50s have been a tumultuous time; I’ve dealt with the unfolding realities of separation, eventual divorce, menopause, gynecological issues, self identification on the autism spectrum, then official ASD diagnoses from 2008 onward.

Then the bottom fell out of my world in Spring 2016 when I had two abnormal mammograms, swiftly followed by a very painful stereotactic biopsy of my left breast in early May. Due to our wonderful Canadian healthcare coverage, I went from that to lumpectomy surgery in five weeks, then on to radiation six weeks after that (it would have been only four weeks but I needed a holiday and to take back control.) I finished rads August 23 so I called it my Sudden Summer Detour.

Everything happened so fast, and now, though I’ve had some after effects, I’m essentially cured (it takes a clear mammogram five years in a row to be official.) No chemo, no adjuvant drug therapy—I am blessed.

So why is it easy to get sympathy for cancer announcements, and so hard to disclose my ASD/Asperger’s diagnosis? I’ve been very selective in who I tell about the latter, but sent monthly email newsletters on my cancer prognosis. I started a thread for neurodiverse women with breast cancer on a private cancer blog, and the only responses were from moms with autistic kids. Sigh….I stopped posting.

I don’t have to look like I have cancer for people to believe me. Why would I make it up? Yet, because I don’t “look autistic,” does that now make me a hysterical female, imagining ailments or trying to excuse ‘poor’ behaviour?

Judy Endow quotes advocate Bridget Allen (italics my emphasis):

“The issue here is classifying autism as a disease to be cured. I make the comparison to cancer. I was a person with cancer (not a cancerous person). I was inherently the same person before, during, and after cancer.

“Cancer was a bad thing I had cut out of my body, and went on with my life. Autism…is woven into every fiber of my being. It doesn’t lay (sic) on the surface to be removed. I am an Autistic woman.”

I like charts, so here are my contrasts.

Breast Cancer (BC) VS.

Autism

‘Person with’ BC

Identity First — Autistic woman

Easy to diagnose

Hard to identify teen or adult female

Lots of money spent

Very little support over age 25

Established protocols

No consistent policy, strategy, or feedback

Debate about treatment

Debate about prevention vs. treatment

Removed from my body

Part of my being

Pathological/clinical model

Social/cultural model

Cure emphasis

Should be support emphasis (not a disease)

People don’t patronize

Many downplay severity and patronize adults

No one says “Oh you can’t have cancer”

Many say “Oh, you can’t be autistic.”

Women get most of the focus

Men get most of the focus

Men have BC too

Autistic women are more common than you think

People want you to wage war, rather than thrive

People think you’re not trying hard enough

Environment not normally blamed

Environment often blamed

No attempt to stop childbirth

In some countries, testing leads to abortions

Future of research looks bright

Most research to genetically remove traits

Autism does not kill. As Maxfield Sparrow (formerly Sparrow Rose Jones) wrote on unstrangemind.com

“Autism is a cognitive and perceptual difference that is so deeply rooted in our neurology that it cannot be separated from our identity. Beneath cancer, there is a healthy child hoping to break free. Beneath autism, there is more autism — it’s autism all the way to the core.”

Max Sparrow goes on:

“Autistic adults often do not resemble the Autistic children they once were — we grow and develop all our lives — but Autistic adults are still every bit as Autistic as they were when they were children, no matter how many coping skills are learned, no matter how ‘indistinguishable from their peers’ they become.” Quoted April 1, 2017 on the A is for Acceptance blog

I may regret the pain and anxieties of being diagnosed with cancer, although that discovery and the costly removal of those worrisome, micro-invasive cells may have saved my life. I will never regret confirming and accepting I am aspie, as this is how I now celebrate my emancipation into full humanity. Before, I did have a piece missing, a piece of my soul; I felt like a misfit and an impostor. I am fearfully and wonderfully made; different, not less.

Breast cancer made me a survivor; my Asperger’s is who I really am. Believe me.

About SWM Correspondent Christine Jenkins

Christine is a certified voice teacher, trained singer and former radio producer with a degree in journalism who also gives piano lessons on her century-old grand. Ms. Jenkins is a peer mentor to many women who suspect they are on the spectrum. Her current special interests are research into and widespread use of female diagnostic tools, avoidance of misdiagnosis, and wellness for senior autistics. She speaks at conferences and was interviewed by CBC radio and the Ottawa Citizen. Christine co-founded the Asperfemme support group that hosted their first women’s conference in 2013. Late diagnosed in 2008, she estimates she is in Philip Wylie’s 8th of 9 Stages of Autism, Unconditional Service to Society. Christine speaks French and German (Swiss heritage), loves writing, reading, sewing, hiking, canoeing, tea and cats. www.facebook.com/CJenkinsMusic

Remember the famous line – “The call is coming from in the house?”- from a classic urban legend horror scene? When it’s discovered that the prank calls are coming from inside the house, the scare factor goes up exponentially. Some people consider that scene to be one of the scariest openings in horror movie history. It kind of happened to me the other day. I was walking around a store and I kept jumping because my heart would explode into thumping wildly just like someone jumped out at me to scare me. I would calm down, and then it would happen again, and again. It was a bit creepy to figure out… it was coming from inside me. The culprits are anxiety and alexithymia (the inability to identify [...]

SUBSCRIBE TO OUR MONTHLY NEWSLETTER

Please Support Spectrum Women Magazine

If you feel Spectrum Women Magazine has helped you in anyway please consider making a small donation in support. We are a completely self funded enterprise with no financial assistance.
The Spectrum Women team comprises of Autistic individuals dedicating their time to positively support fellow Autistics, their family and the wider community.
Please click the button below to make your donation via paypal.